I was spreading my OCD all over the study, when I heard a beep. I stopped short.
“What?” My friend Kevin stared.
“Sshh…do you hear that?”
“Hear what?”
“The beeping. You don’t hear the beeping??”
“Ahhhh…no.”
I gave the room a once over and tried to find the source; then I leaned my neck all the way down as far as I could get it, and tried to put my left ear to my chest.
“Is it coming from in there?”
“In where?”
“In there,” as I pointed to my heart.
“In where, Manah, your left boob?!”
What I was pointing to was my ICD, otherwise known as an Implantable Cardioverter Defibrillators, otherwise known to shock the crap out of you if you so require it. In April of 2006 I was diagnosed with Congestive Heart Failure, and had my first ICD implanted that same May. The device is usually implanted through an incision in the collarbone and rests just above your heart. One end of the leads is attached to the device, while the other is attached to your heart. If, God forbid, my heart suffers from an arrhythmia, in my case an irregularly fast heartbeat, the device provides shock therapy to my heart.
Over the year I got used to having it in me. I almost even enjoyed it. I felt protected, and the fact that it was placed under the muscle gave me the appearance of having fantastic cleavage. I felt good; I was still alive and was awarded a free boob job in the process. Unfortunately, this feeling was short lived.
In February of 2007, I was coming out of the Christopher Street subway station in NYC when I felt my first shock. The immediate thought was that I had run smack into the turnstile, except, I had left the turnstiles behind me. I couldn’t figure out what the source of the pain was. I must have looked bewildered because a man walking beside me stopped short and asked if I was okay.
“I think so….” And then it hit again. It felt like someone was drop-kicking me in my chest.
“No. My machine is firing,” as I grabbed his gloved hand.
We were in the stairwell as he gently brought me to the ground. The police came, paramedics were called, the man sat down next to me and didn’t let go of my hand until the medics showed up. Another girl knelt down and fished through my purse to find my phone. She called my husband.
“Oh crap. I’m dying,”
Sitting on that stairwell I wondered what could possibly be wrong with my heart. It only fires if it detects arrhythmia, right? Wrong. My ICD malfunctioned, and I didn’t know this then. Five shocks, many tears, and a completely un-medicated ride to the hospital later, all I wanted was to be hooked up to a heart monitor…because this would mean that it would be okay to have my device turned off. I was only two months away from celebrating one year of surviving Heart Failure. In the ER, the device shocked me two additional times before the tech came and turned it off. There’s no real way to describe the feeling, except that it was like being electrocuted from within my own body.
Two days later the ICD was removed, and a new one was put in. This time it was placed just under my skin, below my collarbone. This time I went down one cup size and gained an extra boob. Don’t get me wrong, I have amazing surgeons who performed the surgery beautifully. They did everything to make me feel more comfortable and protected. Unfortunately, the idea of having a foreign body in your body, especially one with the capacity to shock you at any given moment, is not one of total comfort.
Even though I named my new ICD, I still found it to be quite intrusive. I was 28 years old, 102 pounds, and barely 5’1”. The size of the device prevents me from having full range of motion on my left side, and I still feel residual pain from pinched nerves and scar tissue from both surgeries. I’m used to it being visible now, but in the beginning, when I was getting used to it, I would cry every time I came out of the shower. I felt ugly and broken and exposed. I don’t think I realized how traumatized I was by the whole ordeal until I think back and try to write about it now. I still become flooded with panic every time I re-live those shocks.
The worst part of it all is the fact that we still didn’t know what the specific cause of the malfunction was. We had to wait for the company to analyze the device and provide a summary of what actually went wrong. I didn’t know what had happened until a few months ago. A lead had fractured, they said. What does that mean? Why did it fracture? What caused it to break? Eventually I learned the model had been “recalled.”
No later than five minutes of my little discovery did one of those typically low budget law office commercials suddenly appear on TV. With words in red flashing all over the screen, they stated “Attention all patients with Defibrillators…..”
You have got to be kidding me.
Two days later I received an email from a random law firm specializing in class action law suits. They found my email address through thepacemakerclub.com. I joined this group when I left the hospital because I wanted to be in touch with other patients who have had the same experiences as me.
At this point I was already suffering from enough anxiety. Really, to get shocked a bunch of times for no reason and then have to go all the back to square one of recovery more traumatized and paranoid than before is just not cool. No amount of Xanax in the world could cure my anxiety; and this is the way I had to find out - through Google and a cheap commercial? How lame. I didn’t receive my heartfelt letter from the company until weeks later.
“Dear ---- Heart Device Patient…”
You didn’t even use my name? Oh come on!
In the letter the company apologized for any “difficulties” they may have caused my family and me. Difficulties? You call unprecedented panic attacks on the subway, numerous trips to the ER, bouts of depression, two surgeries, and large amounts of medication, a “difficulty”? I’m thinking more irreversible trauma than difficulty. But thanks for the letter.
A few days later I went into see my surgeon for a device check. We talked about the recall and he confirmed that yes, I do in fact have recalled leads implanted in me now. Both models, the old one and the new one, have been recalled.
So what now? What are my options? Removing the current leads proved to be too risky, and removing the entire device was not warranted because it’s too early still. My only real option was to have my surgeon program my ICD to warn me at the first hint of any kind of malfunction.
“Sumanah, can you hear this?”
“Yes.” I heard a series of beeps that sounded like a softer version of my mom’s alarm clock.
“This is the sound you’re going to hear if your ICD picks up on any kind problem with your lead wire. The alarm is programmed to sound off at 10:10am at the first sign of a problem.”
For example, if on Friday November 30th my ICD senses a problem with the lead, the alarm inside me will sound off at 10:10am the following day. It has been tested that is the time of day when people are known to be the most alert.
There is an alarm, and it’s inside me. And the thought of it actually going off one morning at 10:10 scares the crap out of me. People tell me I’m bionic, I tell them to find another way to make me feel better.
Can you imagine how many times I’ve woken up thinking that I heard a beep? I knock everything over trying to reach for my clock and make sure that it’s not in fact 10:10am. I never thought that I would ever dislike a time so much. Sometimes it’s the smoke detector, sometimes it’s my husband’s cell phone, but usually it’s in my head. I never thought that my mind would become this inundated with such paranoia and non-existent noises all day long.
These are my thoughts when I’m not feeling 100%, and while I do believe that I have the right to be pissed off, it certainly doesn’t mean that I need to live inside it. Through all of the “difficulties” I like to come out happier, and I thank God that I’ve been given a second chance to live life and enjoy it. What really triggered this piece is the silly little letter that I received from the pacemaker company, and then of course the more recent mysterious beeping coming from my study. It turned out to be the speakers to my I-Pod.
